Luck Fupus

A lupus blog…

…time on my hands could be time spent with you.

There’s a club that many people become a part of, but no one is ever prepared for. Not the Fight Club, but this one is just as taboo and most don’t talk about it either.

It’s the Dead Parents Club, and I became a member last week. Pardon my bluntness, but as I sat to type I knew there was no way to start with a sugar-coated intro.

Daddy passed away last Monday, 13 days after receiving his first t-cell infusion as part of the CAR-T Cell CD19 clinical trial. He fought like a true Marine, but in the end, he got tired and had no more fight left in him.

Mommy, Brie and I… I have no words. His girls are numb. We are broken-hearted, devastated, lost- I’m not coming close to describing the emptiness we are experiencing. It’s all-consuming. I’ve never bought in to having a soul-mate, but I whole-heartedly believe my parents were soul-mates, the ying to the other’s yang. My mom first met Daddy when she was 13, three years later they were dating, another year later they were married.

Their 48 year marriage remained rock solid through 3 separate cancer diagnoses, Parkinson’s Disease (mom), a heart attack (dad), anaphylactic shock (dad), and raising a daughter who needed 4 heart surgeries by the time she turned 6.

Against all odds, indeed.

In cancer, any illness, life really, nothing is guaranteed. Daddy went into this clinical trial knowing there were risks, knowing that the cytokine release syndrome, a massive inflammatory response caused by binding to the t-cells, would do its best to kill him before he began to get better, a double-edged sword, if you will.

He went into this without an ounce of fear, so enthusiastic to be a part of something so BIG. Though his girls down here on Earth can’t imagine going though life without him, I’m trying to accept that this is the way he wanted to go out- SCIENCE. It’s not the result we all imagined, but he was still a part of this cutting-edge trial, his data and experiences will guide scientists/doctors/researchers into how to better treat patients, and eventually cure cancer.

Daddy is, and always will be a key factor in curing cancer.

I don’t know how to end, so I’m going to leave you with the eulogy Brie and I gave at his service last Wednesday. I can’t take any credit, my gifted sister came up with the words to articulate how amazing he is; I just read them.

Our dad was quiet, until he was not. His initial silence might be seen as reserved upon introduction, but all anyone needed was a common thread. Once you unfurled even an inch of shared interest, our dad was weaving a sweater with it. He was quietly strong and varied in his opinions, and he wore them proudly. Fiercely loyal to Israel, steadfastly a man of science. Most of his opinions spoke to his numerical mind, his nature of knowing that there was an answer to everything. And other things, like his irrational hatred of Peter Jennings or his sweetly optimistic feeling that THIS was going to be the Flyers year… well, it proved that perhaps, our nerdy father wasn’t as concretely black and white as it seemed. Or, not at all. Our father was loyal and loving, sensitive and sweet. He felt our happiness and heartbreak as closely as he felt his own. Our parent’s long marriage, with its “against all odds” start, was a streak of bright color. His love for us, and for PJ, perhaps even brighter. In defiance of his pragmatic upbringing, there was a part of his scientific heart that was all poet.

He settled on engineering because it spoke to his technical nature and, likely, because jobs and paychecks are necessary. But our father, before engineer, was a student, and he hungered to know new things. He became an engineer because “professional student” wasn’t an available job choice. When Marla became a nurse, he would read her anatomy textbooks with the same enthusiasm he would read science fiction. When my son was diagnosed with Autism, he would send me articles of autism research, particularly if the study was based in Israel. Coffee is the love language of his wife and daughters, trains the love language of his grandson, but INFORMATION was the love language of our father. He shared it because he wanted everyone to know better, be better, do better. The cancer study he was in was his chance to be a part of something groundbreaking, something that could provide knowledge that would change the face of science. He was so excited about it, and believed very strongly in the emerging science. He made sure he knew everything he could, absorbed it all, and believed the potential reward was worth the risk. It might seem like he went down with the ship, but in reality, he is helping to steer.

Today there is no color, no light, no knowledge for us. our heartbreak feels like the last lesson we will ever learn. Today, our mom and his girls don’t know how we will keep going on without him. But tomorrow… tomorrow. Do us a favor. If something fleetingly catches your interest, don’t just Google it or, even worse, forget it all together. Pick up a damned book. Learn something. Take our dad’s best and most important lesson with you forever- that knowledge and love are the same thing.

Semper Fidelis

Mom and Dad

Daddy & Brie

My Heart


  1. SMD says:

    Beautifully written Brie, and Marla how strong to get up and read that.

    You’re both in my heart along with your mom.

  2. Gwen says:

    What a beautiful tribute. It’s a shitty club to be in but … welcome (?). Much love to you and Brie and to your mom. ❤️

  3. Ursula says:

    Beautifully written. My heart is broken with you. I love you Mom, Brie & Marla.

  4. Dawn says:

    Hardest thing I’ve gone through, thus far, in life, is losing my mom. I understand and I pray for you … all 3 of his girls to get through this together. Broken hearts and endless tears.
    It will bring you closer than you already are… and I know you are. So glad I was able to learn a little about your hero, your Dad just by reading this post.

  5. Anna Watson says:

    A truly wonderful testomy to a dedicated gentleman and his three woeful women. God rest his sweet soul and give you strength, fond wishes from London x

  6. Leslie Rott says:

    I’m so sad that you’re a part of this, but now we are sisters in another kind of struggle.

  7. Genesis says:

    Beautifully written! You and Brie are just small examples of how wonderful your father was. He helped to create two incredibly strong women. His legacy and love will live on forever in the both of you!

  8. Lisa Courtade says:

    I’m crying as I type this. Our fathers sound so similar. I lost mine to lung cancer in January at 73, he was so determined to beat it that it stunned us all when it took him rather suddenly. He was a quiet man who had a passion for learning and my mother was the love of his life. He told her so every single day. I try to honor his optimism and strength in the work I do everyday and it breaks my heart not to be able to hear his voice or to bring him brochures and books from the places we travel that he loved to learn about even though his RA kept him from experiencing them for himself. Your father will live on in you and in the stories you tell. Tell as many happy ones as you can. Today I will cry and pray for your loss. I know it too well.

  9. Stephanie says:

    So many tears. I’m so sorry, thinking of you guys always <3

  10. Christine M says:

    So sorry for your loss. That and so many other common phrases are used to somehow try to express what words cannot convey:unbelievable, life altering loss. I remember vividly when whole world changed and my dad suddenly died. Be patient with yourself . After 40 years I still have a day when I miss him and cry. If he was as loved as my dad it makes it even harder to get over the loss. I am wishing you good memories and a healing of your heart.

  11. Zaira says:

    Hey, I don’t know if you still using this blog.
    I found you thru a website about high cortisol. I thought it was funny how you named. I got curious… I came across your last post back in November, about your father…

    Funny… Welcome to the club!!!

    What a coincidence… My father is also a military, he is a Navy Admiral, wonderful person, very quiet, but some how very loud…

    My parents also met when they were very young, my mother was 11 my father 18.

    He passed away three years ago. Yes I always talk about him in the present tense.

    I was pregnant with twins, I didn’t plan, like you I also have lupus, so at 16 weeks their hearts was very week, I was very sad talking with my father in the phone he told me that what have to happen will happen, we have our time here, we have to do what God planned for us and then we leave…

    My father and my twins passed away in the same day…

    I was here in USA and my father in Brazil…

    So yes… welcome to the club of great dead parents who teach us to be strong and never give up…

    I am sure your father is very proud of you!!!

    Btw, I also have a “defect” in my heart, nothing big, just my mitral valve prolapse doesn’t close properly.

    I have two wonderful boys, my gift from God!!!

    I am going to have a laparoscopy next Thursday.

    I am a domestic violence survivor.

    Sometimes I can’t move because of the pain, sometimes I really don’t know why I am here…

    Sometimes I remember what my father told me .. I look my boys …

    Yeah I am lucky!!!!

    How are you???

    Be strong!!!

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